Jenny Morris

Wednesday, 15 July 2015

Yesterday, 14th July 2015, I spoke at the Reclaiming Our Futures Alliance conference in Sheffield. The number of people there, and the level of debate and contributions, were a tribute to the growing strength of the disability movement. Here’s the text for the speech I gave at the beginning of the day (what I actually said was a bit shorter than written here).

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I’m not going to spend time recapping how awful things are and the impact of recent and forthcoming policies on disabled people. Instead I want to identify some positives, sketch out a few priorities for the disability movement, and at the same time try and identify areas where we might make progress.

So what are the good things we can identify in the political situation that faces us?

Firstly, there is growing and energetic grass roots movement of disabled people which in many ways is bigger and has more potential than the earlier years of the disability movement. Social media is a key factor in this - a tool which we didn’t have in the 1980s and 1990s. This makes communication faster and more far-reaching than we could have dreamt of in those earlier days. It also means that our movement is more inclusive: people who find it difficult to attend meetings or marches, or to be involved in other forms of formal organising, have made some of the most important contributions to recent activism. The Spartacus Network's reports and Catherine Hale’s research on ‘back to work’ programmes and people in the Work Related Activity Group are good examples. And it means that experiences which are by their nature socially isolating are making their voices heard in the public sphere.

Secondly, the impact of government policy on disabled people is much more of a mainstream political issue than it ever was. This is partly because of the disproportionate effect of austerity policies on disabled people but it is also because disability activists have been so prominent in the public debate. The fact that DPAC’s banner was at the front of the Anti-austerity March on June 20th illustrates that disabled people are at the head of the fight against the current government, rather than being on the periphery which is where we have usually been.

Thirdly, social care policy is moving up the political agenda - primarily because of the mounting crisis caused by local government cuts already made and the far worse ones which are about to come. Local authorities (even the Tory ones) are potentially on a collision course with central government, particularly because there are increasing signs of a collapse in the market of private care providers (who can no longer make the kind of profits their shareholders require because of the cuts in local authority social care budgets). Disabled people have won important fights before by making alliances with local government. There is potential for doing this again.

And fourthly, the real world is at odds with the political rhetoric - one key example being the failure to reduce the numbers of people receiving out of work disability and sickness benefits. Over the last 30 years or so governments have brought in new assessment systems, accompanied by a range of threats and promises about stopping people ‘languishing on benefits’ but each time they have failed to significantly reduce the numbers - although in the process of trying they have ruined many people’s lives. All the evidence is that it is the behaviour of employers and what is happening in the wider economy which increases employment rates amongst disabled people - only when employers adapt working conditions, and support people to keep their jobs when they have periods of illness, will we increase employment opportunities. The gap between rhetoric and reality is also created, firstly by an ageing population - people in their 50s are more likely to be unable to work because of ill health - and secondly because the way our economy is run is increasingly bad for people’s health.

In terms of our priorities and where we might make progress, I think the most important thing is first to be clear on what our principles are and to hold fast to these.

In particular, we must not get drawn into using language which is diametrically opposed to disability rights and independent living. For example, we have to resist the term ‘vulnerable’. It’s too easy to use this word in making the case against the devastating impact of cuts in benefits and services. But this kind of language undermines us. It’s part of an agenda which is about separating out the ‘vulnerable’ from the ‘shirkers’, the deserving from the undeserving. Let’s be clear, this rhetoric is a direct consequence of the government’s aim (which was also the aim of the last Labour government) of reducing the amount of money spent on both out of work disability benefits and additional costs benefits like DLA.

It’s a term which is part and parcel of the current government’s aim of a ‘small state’ because it implies that there is this small group of people who are so ill or disabled that they require ‘special’ treatment but everyone else must sink or swim according to their own efforts.

Our resistance to current policies should instead be based on arguments about social justice, about equality, about disabled people aspiring to the same human and civil rights as anyone else. Resistance should not be based on separating out people with the most significant impairments or long-term health conditions and making them into a ‘special case’, to be ‘protected’ by a very basic safety net.

Our resistance should be based on recognition that currently we have the kind of economy which creates low paid, insecure jobs that are bad for people’s health. An economy which creates working conditions that demand a level of fitness and resilience that many, many people do not have. These are mainstream issues in that they are issues which affect a much much wider group of people than those who are identified as ‘disabled’.

Our priority should be to make alliances with those more generally affected by our dysfunctional, unhealthy economy. We should therefore be broadening out disability as an issue rather than making a special case of our so-called ‘vulnerability’.

Really good work has been done by disability activists and others to expose not only the flaws in the Work Capability Assessment but also the inability of private sector organisations to deliver what they promise when they tender for outsourced services. And no doubt there will continue to be such opportunities. But it’s really important that this campaigning puts disability equality principles at its heart. This means showing how the behaviour of employers, and the kinds of low paid, insecure jobs on which our economy relies, create impossible barriers to employment for many people. It means focussing on how the WCA is not even fit for its intended purpose, that sanctions are not only unfair but ineffective, and that so-called employment support programmes are not actually supporting people into employment.

And it means focusing on the failure of current government policy to recognise illness as a barrier to work. This last issue in particular has great potential in building broad alliances and exposing not just the callousness of government policy but also its impracticality. This is a key policy area where we can also demonstrate that policies that work in the real world have to be developed in partnership with people whose lives are affected by them.

The Chancellor’s decision to remove those placed in the Work Related Activity Group from long-term benefit rates and only pay the same rate as Job Seekers Allowances opens up a real campaigning opportunity. This change will not come in until April 2017, and only for new claimants. This gives us time to expose the huge gap between rhetoric and reality - people in the WRA group are disabled, are ill, and are assessed as not currently capable of work. There is considerable lack of understanding about this. Moreover, the Work Programme has proved unable to help more than a small percentage into work - which is not surprising given that it has been developed with no involvement from those with real expertise in what good employment support looks like - disabled people themselves.

This relates to an opportunity which is not just of concern to disabled people but to the majority of the population: how to design and deliver services that are responsive to the wishes of individuals, that are accountable to their users (rather than to shareholders - as in the private sector - or to a professional group whose culture is one of ‘we know what’s best for you’ - as is far too often the case in the public and voluntary sector).

The post-second world war welfare state may have been radical and empowering for its time but its bureaucratic and professionalised way of delivering services and support too often actually disempowered people. Which is why we had to develop direct payments as a way of delivering self-determination for people who need support to go about their daily lives.

Where policy and its implementation is not driven by those who use services you get situations where, for example, employment support services have very poor rates of actually helping people into sustained employment; where people with autism and/or learning disabilities are institutionalised for years in expensive services many miles from their family and friends; where disabled and older people are ‘warehoused’ at home or in residential settings.

As we know, social care is facing a crisis. Crucially, this is affecting a much larger group of people than has been affected by cuts to disability benefits. We need to make alliances with older people and also family carers. There is scope in the context of the campaigning which needs to happen - and will happen - to push our concept of independent living. The original vision which drove the campaign for direct payments may have been subverted into a bureaucratic system of rationing ever-scarcer resources but that doesn’t mean we should abandon the aim of self-determination. It just means we have to be clearer than ever in our demand for control over the support we need to go about our daily lives.

The magnificent fight waged against the closure of the Independent Living Fund has brought into the public spotlight a question that needs to be continually asked of the government: “Are you telling us that our society cannot afford to enable disabled people to have the kind of life, the kinds of opportunities, that non-disabled people take for granted?”. One of our priorities should be to keep asking this question. But we should also broaden it out because it is a question which applies to a much larger group than those who are commonly labelled as ‘disabled’, namely older people, including people with dementias. The cut-backs in local authority budgets mean that increasing numbers of older people, who need support in their daily lives, are imprisoned within their own homes, receiving diminishing levels and quality of support, relying more and more on family, friends and neighbours for the most basic care.

We need to build alliances with organisations representing older people and family carers. And at the same time, seize the opportunity to influence their campaigns with our vision of independent living because this vision applies just as much to older people who need support in their daily lives as they do to the younger disabled people who developed them. And as my generation, which came of age in the 1960s, enters old age I cannot imagine us being willing to put up with the ageism which is at the heart of many of the services on which we will come to rely.

The final point I want to make is that there is scope for both pissing inside the tent as well as outside of it. Successful movements do both. Trying to work with individuals and organisations who do not necessarily share our worldview is frustrating. But it has to be done. We made significant achievements in the past at both national and local government level, sometimes alongside voluntary sector organisations that we had profound disagreements with (even if we had to hold our noses). We need to recognise that there are individuals working within these organisations (and at national and local government level) who we can truly count as our allies. We need to be able to support them: this means recognising the value of what might be called the “pragmatism of small step progress” while not losing touch with our fundamental critique.

In the current political situation, where so much is against us, we do yet have a history of 30 years of disabled people’s struggle to build on. And we have more and more people identifying with that struggle, and more effective ways of organising. The greatest opportunities are created by the ways in which it is now clear that our fight for social justice and a decent quality of life is also at the heart of a broader fight. Remember less than 1 in 4 people voted for the manifesto that this government is currently implementing - and some of the things it is doing weren’t even in their manifesto anyway. That is a significant democratic deficit. It opens up considerable opportunities for exposing the gap between rhetoric and reality, for voicing our vision of how to deliver human and civil rights for disabled people, and for building alliances with the increasing numbers of people affected by this government’s disastrous policies.

Friday, 19 June 2015

So here’s the second of my blogposts based on ‘stuff’ that I’ve found difficult to throw away while clearing out my study. (The first one was about language and human rights). What is also relevant to this blogpost is the lobby of Parliament planned for Wednesday 24th June 11a.m. in a last ditch attempt to persuade the government to change its mind about the closure of the Independent Living Fund (see http://dpac.uk.net/2015/06/corrie-stars-back-the-campaign-to-save-the-independent-living-fund/ for more details of this and the petition).———————————————————————————In 1991, I received funding from the Joseph Rowntree Foundation to carry out research which aimed to explore what independent living meant to disabled people. The research concerned people with physical impairments under retirement age, who were either living in residential care, receiving social services in their own home, or employing their own support workers (1).

The general context was the NHS and Community Care Act 1990, which had the potential to enable more access to independent living but which also had its limitations. The other important context was that the Independent Living Fund had been set up in 1988 and was already making a difference to the lives of a small but growing number of people. In addition a few pioneers of independent living received cash payments from their local authority to enable them to employ their own support workers (though technically local authorities were prohibited from doing this).

When clearing out my study last month I found the notebook I kept during the process of doing the research. These included notes of my experiences of visiting residential homes to carry out interviews which I had set up by letter and telephone with people who lived in these settings. The interaction with staff when I arrived at the homes was often rather disconcerting, as in this example:

Two people are in the office; they both look at me as I come in but carry on talking to each other. Not in a way of finishing off a conversation. It becomes almost embarrassing the way they seem to be deliberately keeping me waiting. Eventually, I butt in and ask if they could let KT know I’m here. “Are you from an organisation or is it personal?” I explain that he’s expecting me. “Yes you can see KT. That will be alright”.

I assume these two women are care workers as both are wearing uniforms though neither of them have name badges or, at any point, say who they are.

After chatting a bit more, one of them goes off and then comes back to say “He’s on the toilet”. Ten minutes later “He’s still on the toilet. He takes a long time”. More time elapses. “He says he doesn’t know who you are”. I explain I’ve received a letter from him and have also talked to him on the phone to set up the meeting. I then ask for ND (another person who has agreed to take part in the research). She goes off and then comes back to tell me that NF is out. I say, No it was ND I’ve arranged to see.

This is starting to feel like a Monty Python sketch, particularly as she’s walking around with a parrot on her shoulder - but it’s not dead. [I have no memory of this but it must have been true, I was writing these notes sitting in my car afterwards.]

Another care worker comes up to me and says “You’ve waited long enough. I’ll go and find ND for you”. I thank her and ask whether she could also check whether KT is expecting me.

And so, finally, I get to see both of them.

During the 20 years or so that I carried out research I went into a lot of institutional settings to interview people who lived in them. Sometimes I had good experiences but mostly they were of a very disconcerting nature. Partly staff were thrown by the fact that, although I was presenting as a ‘professional’, I also looked like many of the people living there in that I’m a wheelchair user. So I think they found it rather disconcerting as well. I was ‘out of place’, not in the role that they were used to for people ‘like me’.

I’ve kept the interview transcripts of the 50 people I interviewed in 1991, including those of the two men in this particular residential home. One was in his early 20s and had moved there straight from a residential school:

I ask when I want help here, there’s a buzzer. Half an hour later they come. It’s very frustrating. Sometimes they’re quicker, sometimes not. I get nagged here - about nothing. I don’t know what they want me to do. It’s because I’m young. They treat me like a child - some don’t but some do….I want to live in my own flat because here the staff tell you what to do. They’re not supposed to but they do….. I want to have control over my life.

And the other man, who had been there for 18 years said:

It’s got worse over the years, it’s more now what the staff want. I don’t have control over my life….. I’ve been trying to leave for 8 years…at first I had a social worker who was no good but now I’ve got a better one and I’m going to get help, she’s sorting that out.

Both these men were looking to the Independent Living Fund to enable them to leave residential care, in the hope that this would give them more choice and control over their daily lives - in the hope, indeed, that it would give them a future. The momentary feeling of powerlessness I experienced in my interaction with the care staff that day was nothing compared to the lack of autonomy which pervaded their daily lives.

The Independent Living Fund had been set up in 1988 as a result of changes to the social security system brought in by the 1986 Social Security Act. This brought in a new Income Support system which abolished the additional payments for ‘domestic support’ that had been part of the Supplementary Benefit system. At the same time there was some recognition that the benefit system was not flexible enough to deal with the particular costs that some disabled people had, partly because costs varied according to individual requirements and partly because many people not in receipt of means tested benefits had just as much difficulty meeting these costs.

The ILF was therefore set up as a charitable trust funded from the social security budget. We have lost sight of how revolutionary the original ILF was.It was open to people of all ages (older people made up 37% of recipients by the time the original Fund was closed down in 1993). It was also open to people with a wide range of support needs, including those who needed just a small amount of help as well as those who had high support needs. Although there was a means test applicants did not have to be in receipt of benefits in order to qualify for a grant.

It also illustrated that it was possible to operate a system where national eligibility criteria triggered a right to a cash payment but the level of payment varied according to individual circumstances. Most importantly, it “demonstrated that large numbers of even the most severely disabled people want to manage their own personal assistance and are capable of doing so”. (2)

The radical nature of the original ILF was made possible because the government mistakenly thought that only a very small number of people would apply and the original budget was set at only £5million. But by 1992 its annual budget had reached £97million and over 18,000 people were receiving ILF grants.

For a brief few years therefore, our social security system enabled people, of all ages and any impairment who have additional support needs, to be funded to meet those needs in ways which gave them choice and control over their lives. The explosion of demand illustrated what disabled people and their families aspired to and how lives could be transformed.

However, when the original ILF was replaced by the 1993 Fund, eligibility was restricted to those aged 16-65, who received the higher rate of the care component of Disability Living Allowance, who were on Income Support, and who already received at least £200 worth of local authority-funded services per week. This meant access was denied to older people and to, for example people with mild learning difficulties who did not meet local authority eligibility criteria. It also created wide variations according to local authority practice in referring people to the ILF93 (ironically one of the reasons the current and last government gave for abolishing the ILF). In addition, an upper limit of £300 ILF grant was imposed.In spite of these limitations, the ILF93 has enabled thousands of people to do the kinds of things, lead the kind of lives, most non-disabled people take for granted.

I stayed in touch with some of the people I interviewed in 1991/2, including the younger of the two men mentioned above. When I lost touch with him, in 2000, he was still in the same residential home but about to be moved because the charity running the home was ‘decanting’ (as they called it) ‘residents’ (as they called them) into ‘independent living flats’ (as they called them) on another site so that they could sell for development the rather desirable piece of land on which the home stood.

The radical nature of the original Independent Living Fund happened by accident, not by design. Those who do design policies about how to support disabled people often have the best of intentions and are sometimes profoundly influenced by disabled people’s own ideas and aspirations. This was the case with the history of direct payments, which were developed by a small number of individuals who demonstrated that giving them the money to enable them to arrange their own support not only enabled them to lead ‘ordinary lives’ but was also cost effective.

However, once direct payments were adopted as national and local policy (from 1996 onwards), its implementation was put in the hands of people who are working within a culture that assumes the primacy of ‘professional judgement’, that distrusts people to determine how best to meet their own needs, and which - most importantly - is dominated by the need to ration ever scarcer resources. These factors have held back the potential of direct payments ever since their introduction but they have become even more dominant in recent years.

The result is too often a denial of autonomy, of self-determination - perhaps the most fundamental of human rights.

Twenty-five years ago, very few of the people I visited in residential homes, or those receiving home care social services, felt they had choice and control in their lives. The powerlessness and isolation they experienced is what current ILF recipients fear when the ILF is closed down at the end of this month (June 2015).

People like Penny Pepper have described the difference that the ILF has made to their lives

ILF, through the care workers it paid for to match my needs and lifestyle, was a revelation. I had the same three people helping me wash and dress; the choice to change my mind in what I wore, what I ate, in when I got up – and the freedom to go to the toilet when I needed. It’s impossible to overstate the effect of this liberation.

There is a woman in my village who is struggling to remain living in her own home. She gets what is considered an ‘intensive care package’ from the local authority - which means she gets a half hour visit at 10a.m., an hour at 12.30 and another half hour at 7.30. As one of the neighbours supporting her says, ‘she is going stir crazy stuck inside. Having spent her whole life working the fields she is finding herself quite suffocated at the moment”.

As I said in my previous blogpost, human rights, and their abuse, begin in the detail individuals’ lives. They begin in the way we relate to each other, the language we use. But they are also manifest in the way our society responds to the needs of people who require support to go about their daily lives, who need assistance if they are to exercise the basic choices that most people take for granted. The closure of the ILF and the refusal to adequately fund social care represent our society’s acceptance that many disabled and older people face isolation and a lack of choice and control over the basic activities of daily life.

Sunday, 31 May 2015

I’ve spent this month (May 2015) not only feeling devastated by the general election result but also trying to clear out my study - both of which have made me feel that half my life is being thrown away.

The ‘stuff’ accumulated over most of my working life up until 2010, when I retired, represents the battles waged to articulate disability as a human and civil rights issue. It has been (and continues to be - I haven’t quite finished it yet) very very hard to divest myself of these various documents - many published in the days before internet publication. It’s made even more difficult because at the same time we are faced with five years of a government seemingly determined to roll back the progress disabled people have made. The five years since 2010 were bad enough - now things can only get worse.

So, partly to make myself feel a bit better but mainly because it’s so important not to lose what we’ve already learnt, I’m going to write a series of blogposts based on some of the stuff which I’ve found it impossible to throw out.

This first one links language and the current assault on human rights.

In 1995, an organisation called Community Partners, based in Guildford, published this in ‘The Advocate’ Newsletter.

You and I

I am a ‘resident’

You just live at your place

I live with seven others, a couple of whom I don’t really like

You’ve just got a new place with a couple of friends because you didn’t like the people you were sharing with

I’d like to leave my room in a mess but staff tell me I’m learning something when I clean it up very day

You tell me your room is a disaster area

I am aggressive

You are assertive

I have behaviour problems

You are rude

I’m non-compliant

You don’t like being told what to do

I’m on a special diet because I am 5 pounds over my ideal body weight

Your doctor gave up telling you

When I ask you out for dinner, it is an outing

When you ask someone one - it is a date

I want to talk with the nice looking person behind us at the grocery store. I was told it was inappropriate to talk to strangers

You met your husband at the cheese counter. He couldn’t find the brie

I think some of the people who are paid to work with me are my only friends

You have lots of friends; none of them are paid

I don’t have anything to say who I am

You’ve got your driving licence

My Case Manager, Psychologist, Occupational Therapist and House Staff set goals with me for the next year

You haven’t decided what you want out of life

I don’t know how many people have read the progress notes people write about me. I don’t even know what is in there

You didn’t speak to your best friend for a month after he read your journal.

This juxtaposition between ‘ordinary life’ and that of people identified as ‘service users’ is all too familiar to disabled people and their families. Mark Neary is only one of many who has drawn attention to it in more recent years but we seem to be banging our collective heads against a brick wall as far as ‘services’ are concerned.

The issue of language used about people who need support in their daily lives is not a trivial one. Such language creates a separate group of ‘service users’ and this separation undermines our common humanity.

It’s the failure to recognise common humanity which lies at the heart of the whole continuum of the way disabled people are so often treated - it starts with dehumanising language and ends with the worst kind of ‘institutionalised’ abuse such as that which took place at Winterbourne View or Orchid View.

If you see someone as fundamentally different to you then you are unlikely to treat them as you would wish to be treated yourself. A failure to apply this golden rule of ‘Do as you would be done by' is evident in so many of the more or less routine ways in which people are dehumanised. To take just a few examples:

Do you think that the Chief Executive of Southern Health was applying the golden rule when she wrote about the Root Cause Analysis carried out, to the grieving mother of a young man who died while in the care of her organisation?

Do you think the politicians responsible for closing down the Independent Living Fund put themselves in the position of people like Mary Laver whose whole way of life is threatened as a result?

It’s important to make links between the ongoing struggle amongst disabled people and their allies for recognition of our common humanity and the current onslaught on human rights generally, in the context of the Conservative Party’s manifesto commitment to “scrap the Human Rights Act”.

The underlying principle of human rights is that they are universal - by definition they apply to us all by virtue of our common humanity. A failure to acknowledge and uphold an individual's or a group of people’s human rights is a denial of their humanity. For disabled people, this denial often happens implicitly - with assumptions that a particular right is not ‘relevant’ or that denial is in someone’s ‘best interests’.

The website, rightsinfo.org, is running 50 stories about the real-life application of human rights law and several directly concern disabled people.

For example, disabled people’s right to a private and family life was upheld when the High Court ruled in 2003 that a local authority had breached a disabled woman’s right to a private and family life by failing to correct a situation where she was unable to use the bathroom in her house because it was inaccessible to her.

The fight to prevent the government repealing the Human Rights Act is a fight on behalf of us all. At the same time, we must remember that, as Eleanor Roosevelt said: human rights begin “in the small places, close to home - so close and so small that they cannot be seen on any maps of the world”. Human rights, and their abuse, begin in the detail individuals’ lives. They begin in the way we relate to each other, the language we use: “Unless these rights have meaning there, they have little meaning anywhere”.

Wednesday, 1 April 2015

One of the depressing things about having been politically active during the 1980s is that so many of the things we warned about happening, as a consequence of Tory policy then, have come to pass.

Like many other policy areas, 1979 was a watershed in the landscape of housing opportunities in this country. From 1918 to 1980, owner occupation and council housing grew while private renting gradually declined. By 1980, a third of housing was rented from local authorities, just over half was in owner occupation while only 11% was privately rented.

By 2012, the private rented sector had increased to 17%, while 10% was rented from housing associations and council owned housing had fallen to 8% of the total housing stock.

It was the Right to Buy, and associated policies, which were responsible for this fundamental change in the pattern of housing tenure. Councils were always able to sell their housing to existing tenants but it was voluntary, and sales required the approval of central government. However, the Conservative Party manifesto of 1979 manifesto made the sale of council houses a key part of the election campaign, offering generous discounts and no restrictions on resale.

Conservative housing policy was also aimed at reviving the private rented sector by introducing shorthold tenancies, in order to make housing a more profitable investment for private landlords.

These polices were part and parcel of a wider agenda on the welfare state, which started in 1979 and continues to play out today. As two academics at Bristol University wrote in the early 1980s: “The reduction in the size of the public housing sector has become part of a general strategy to restructure and reduce state provision across the whole range of welfare services, from education, and health, to refuse collection”. (1)

Indeed this was the first, but by no means the last, government policy which promoted ‘subsidised individualism and residualised collectivism”. (2)

Thirty-five years after the Conservative's 1980 Housing Act we are facing the results of this fundamental shift in housing policy. The residualisation of council housing is reflected not only in the reduction in the size of the tenure but also in the increasing proportion of council tenants in receipt of social security benefits - partly because the better off ones bought and partly because of the rise in rents.

Housing costs have increased across all tenures: amongst owner occupiers and private renters because of the continuing shortage of supply; amongst housing association and council tenants because of changes in housing finance.

There has been a fundamental shift of expenditure from capital investment in housing (building new homes) to revenue expenditure in the form of housing benefit (propping up higher rents in social housing and subsidising the profits of private landlords). The latest manifestation of this shift is the introduction of ‘affordable rents’ for new housing association and council tenancies, set at a maximum of 80% of market rents and acknowledged by government as costing more in the long term because of the resulting increase in housing benefit expenditure.

The shift from capital investment to subsidising high rents has accelerated in the last five years, reflected in the dramatic reduction in the numbers of social housing properties built: in 2009-10, there was a total of 39,492 housing starts of properties to be let at social rent levels; by 2013-14, this had fallen to 3,961. Even including housing to be let at ‘affordable rent’ levels and ‘affordable’ home ownership there had been a 22% reduction over this period.

The Coalition government has decried the increase in housing benefit, focussing on the ‘failure’ of individuals to find a job or work hard enough to get themselves ‘off benefits’. In reality, it is government policy which has created the need to subsidise rents, but the focus on individuals suits the Conservative Party’s desire to bring about a residualisation of collective provision (i.e. the welfare state) until it only caters for a small stigmatised minority.

Not only have individuals suffered as a result of the shift in housing policy since 1979, but local authorities (and indeed government) now have less influence over whether housing markets will meet housing need. An erosion of local authority influence over rent levels (because of changes in housing finance) and over local housing markets generally makes it harder to, for example, ensure sufficient affordable housing to support local employment, or to prevent second home owners pushing up house prices.

The tragedy is that there seems to be very little resistance to the ideology which underpins these changes in housing policy and in particular very few people are defending the idea of secure, affordable, publicly owned housing. And now the Conservatives have floated the idea of extending the Right to Buy to housing association tenants, although they have been warned that this would severely threaten the financial viability of the sector.

There is general agreement that the fundamental cause of housing problems in this country is the lack of supply, so Tory and Labour vie with each other to promise to tackle this by increasing house building. The main sources of increased supply are, however, assumed to be in the owner occupied sector where government action is primarily limited to demand-side policies whose main impact is likely to be an increase in house prices. At the same time the rent levels for any new social housing will not be set, as they previously were, by taking into account what local wage levels could sustain. Instead, rents will be set in relation to market rents which, in high rent areas (but particularly London and the South East) will belie their Orwellian label of ‘affordable rents’ for many many people.

The advantages of social housing used to be that you paid a rent which was affordable in the context of local wage levels, you got security of tenure, and you didn’t have to worry about the costs of repairs and maintenance. In order to undermine this important option, Conservative policies since 1979 have resulted in an increase in rents, undermined security of tenure, and promoted individual self-interest to remove properties from future generations of households in housing need.

Buried in the Coalition government’s Impact Assessment on the introduction of ‘affordable rents’ is the statement: “ An increase in social supply reduces the numbers in housing need by three times as much as a rise in private supply of the same amount, with these housing services better targeted at those in need.”

So, a key question for all politicians during the rest of this general election campaign is: An increase in the supply of social housing is the most effective way of reducing the numbers in housing need, so will you invest in secure, affordable, publicly owned housing?

Ray Forrest and Alan Murie, 1984. Right to Buy? Issues of Need, Equity and Polarisation in the Sale of Council Houses, University of Bristol, p.59.

Wednesday, 4 March 2015

A recent article in the Guardian drew attention to the BBC’s current efforts to increase the numbers of disabled people on and off-screen. Tania Motie and Tanni Grey-Thompson argued that there are three stereotypes applied to disabled people - we are heroes, scroungers or brave victims. The BBC, they wrote, has a role in challenging this, and that:

Sophisticated, multi-faceted, authentic portrayal influenced by disabled people will really help to break down barriers and allow disability to become part of the DNA of our society.

This reminded me of how, 23 years ago, in 1992 - which like 2015 was also a general election year - the BBC launched a series of programmes made with and about disabled people, together with a booklet and poster advertising. The series and the booklet were called Disabled Lives:we wanted to call it Disabling Society but Channel 4 had got there first with their own series that same year. The initiative resulted from an Advisory Group made up of disabled people brought together by the BBC to help them develop programmes which challenged the stereotypical and unrealistic ways in which disabled people’s lives were portrayed.

It sounds familiar doesn’t it? But there were some differences.

The key difference is that, in 1992, disability was increasingly being identified as a civil rights issue, whereas today public debate is dominated by arguments and counter-arguments about whether we are ‘scroungers’ or ‘vulnerable’.

The 1992 booklet said that it, and the BBC series of programmes, was about:

one of the most exciting civil rights issues of our times, the right of disabled people to participate equally and fully in the communities in which we live….Today, there is a growing movement of disabled people who insist that our lives have value and that we want to be treated as equal citizens with equal rights.

This was before the Disability Discrimination Act which was finally passed in 1995 after many years of campaigning. The programmes and the publicity gave a voice to this demand for an end to discrimination, but also emphasised the importance of changing the dominant cultural representations of disabled people, arguing - as Elspeth Morrison (one of the Advisory Group’s members) put it:

If we have no representation of ourselves other than those images used in charities’ advertising, crippled witches in children’s books, brave and tragic media stuff, theatre and film’s metaphorical use of disability as social inadequacy, social decay - if there is no expression of life as we live, it, how do we begin to validate ourselves and learn about each other?

One of the photographs (taken by David Hevey) used in the booklet and in the posters - was of the Direct Action Network holding up a bus in Manchester. No buses were wheelchair accessible at that time and access to public transport was an important part of the campaign for anti-discrimination legislation.

Independent living (having choice and control) was also a key focus, for people with the whole range of impairments and across all ages. The Independent Living Fund had been established in 1988 and more and more people with high levels of support needs were accessing it and starting to live the kind of lives their non-disabled peers took for granted. In general, more disabled people were demanding, and getting, their entitlements to support to enable them to go about their daily lives.

Organisations of disabled people (as opposed to the charities speaking for disabled people) were increasing in number and influence in the early 1990s, reflected in the fact that the people on the BBC’s Advisory Group were mainly from organisations of disabled people. The initiative encompassed Deaf people, people with physical and/or sensory impairments, people with non-evident impairments and health conditions, people with learning difficulties, mental health service users and older disabled people. As People First (the organisation of people with learning difficulties) said:

We are for difference

For respecting difference

For allowing difference

Until difference

Doesn’t matter anymore.

In the early 1990s, the most influential stereotype of disabled people was of us as objects of pity, as tragic victims who, at best, could be admired for ‘overcoming’ against all odds, at worst were considered to have lives not worth living. The response of a government Minister to one of the petitions calling for anti-discrimination legislation was to say that he didn’t believe employers discriminated against us, rather they felt sorry for us.

Nevertheless, in 1992 things were shifting. In the run-up to the general election, the Conservative Party (in government since 1979) devoted a specific section in its Manifesto to commitments to disabled people, celebrating that:

Under the Conservatives, more disabled people than ever before are getting the help they need and deserve. Since 1979, the number receiving Attendance Allowance has more than trebled; the number receiving Mobility Allowance has risen six fold; the number receiving Invalid Care Allowance has risen 25-fold. Today we spend some £12,000 million a year on benefits for long-term sick and disabled people. Even after allowing for inflation, that is 2½ times as much as Labour spent in the 1970s.

The Tories promised to introduce “new disability benefits [Disability Living Allowance and Disability Working Allowance] which will, in the next Parliament, bring extra help to at least 300,000 people. By 1993-94 these and other improvements will mean that we will be directing an extra £300 million a year to long-term sick and disabled people.”

They were proud of the “great success” of the Independent Living Fund and gave a manifesto commitment to maintaining it.

The Labour Party had very little to say about disabled people in their 1992 manifesto. There was a nod to ‘training’ opportunities, to health services for people with long-term conditions and to better community services for people using mental health services and for people with learning difficulties. The Liberal Democrats’ manifesto had more, committing them to introduce a Citizen’s Income with a specific disability component, human rights legalisation (to include disability) and a Charter of Rights for disabled people.

In those days, very few people argued that too much was spent on disability benefits. Very few people thought that disabled and sick people were making false claims for out of work or disability benefits.

In fact, in 1992 the Conservative government felt that not enough disabled people were being helped and introduced new benefits for which more people were eligible. Today the Coalition government argues that too many people are receiving help with the additional costs associated with impairment and disability. The Disability Living Allowance - which the Conservative government of the early 1990s was proud to introduce - has been abolished and replaced with Personal Independence Payment with the aim of reducing the budget by 20% and accompanied by such long delays in responding to claims that a Judicial Review has been granted of the process.

In 1992, the government were proud of the Independent Living Fund and vowed to keep it. Today, they have abolished it and many people with high support needs are at risk of losing the ability that ILF funding gave them to live ‘ordinary lives’.

In 1992, public debate was about whether disabled people were to be pitied as the objects of charity and needed to be ‘looked after’, or whether we should have equal rights to access education, employment, independent living. Today, public debate is about whether we are avoiding our responsibilities to seek employment and need conditions and sanctions to get us ‘off benefits’, or whether we are ‘vulnerable’. Instead of recognising the additional support, and the removal of barriers, which are required in order for us to access the same opportunities as others, we are - in order to avoid being labelled as ‘scroungers’ - once again forced into the role of tragic victims, where the legitimacy of our requirements is to be measured by how ‘vulnerable’, ill and/or impaired we are.

So if we are to avoid being identified as ‘scroungers’, we have to prove how ‘vulnerable’ we are made by our impairments, illness and/or age. Yet ’vulnerability’ is created by the society in which we live - by lack of appropriate support, and by prejudicial attitudes. ‘Vulnerability’ is created, for example, by removing benefits from someone because they failed to fulfil conditions which illness, impairment and/or poverty made difficult for them to do. ‘Vulnerability’ is created by threatening to stop providing support to enable someone to go to the toilet when they need to. ‘Vulnerability’ is created by a lack of suitable, affordable housing for a family affected by illness and disability.

Tackling discrimination, removing barriers, providing appropriate support which gives us choice and control in our lives - none of these are on the agenda for public and policy debate anymore. Instead, our social worth is to be measured by whether we are ‘hard-working’, which means engaged in productive labour. Other important social roles - looking after others, bringing up children, contributing to our friends, families and communities - are not deemed worthy of support or celebration.

The BBC’s current initiative - all these years after the 1992 initiative - to increase the numbers of visible, ‘happen to be’ disabled people on screen and to increase their employment off screen is laudable. But we also need to change the language of public discourse about sick and disabled people.

In particular, we need politicians, and all those participating in public debate in the run up to the election in May, to change the way they talk about disabled people. We need to revisit the language and images the disability movement tried so hard (with some considerable success) to promote during the 1980s and 1990s - language which returns to some of the hopes reflected in the BBC’s booklet all those years ago:

Disabled people are fighting for a society which celebrates difference, a society which does not react to physical, sensory or intellectual impairments, or emotional distress,, with fear and prejudice. We want a society that recognises the difficulties we face, but which also values us for what we are.

Our hopes for the future are based on the justice of our wish for control over our lives, the strength of our demands for equal participation, the passion of our belief in the value of our contribution to the communities in which we live.

About Me

I used to spend my time using research and evidence to influence disability policy. I stopped doing that the week before the 2010 general election. Most of what I’ve written, including ‘Pride against Prejudice:transforming attitudes to disability’, has been posted on the Leeds Disability Archive - http://bit.ly/jennyarchive ......
Now I spend my time gardening.